Friday, February 29, 2008

Day 53

We're all fine! Don't worry! I know I've been MIA for 48 hours - my apologies. Wednesday was spent cleaning all day - my parents house had a showing and it was ... uh ... pig sty material.

Thursday morning we left very early for Tauranga. Heather came and changed Joshua's bandages and the antiobitic cream seems to have worked GREAT! This is fantastic because his doctors don't want him on continuous antibiotics, because eventually he'll become immune to them. We went down for my first big meeting for communications with Marine Reach Ministries. There's a big send off for the ship on the 5th of April, and I'm "in charge" (how terrifying) of the event. So there's a lot to do. Anyways, we were planning to go down, have one meeting, go out and look at houses, come back for a 2nd meeting, and then go home. Instead...

Matt had his meeting and I had my first. Then we went out looking for houses... I thought this whole renting houses thing was easier. So after a lot of frustration and a bunch of phone calls two days later - we've not looked at a single house. And we don't even have one full application put in... pieces of one and a bunch more sitting in a box in my kitchen. I was frustrated and gave up... what can I say?

We stayed the night at a friend's place - Joshua's adopted great grandparents - Ben and Helen A.
He's one of the old ship captains from way back... he's so wonderful and Helen is just a delight to be with. Helen and Ben had a daughter - Jenny - who caught meningitis as a baby. She was misdiagnoses for several days and by the time it was diagnosed, the damage was already done. Jenny was never "normal" after that and developed hydrocephalus. She lived for 5 years (she died as a result of having her teeth pulled ... not because of her condition). Helen has a soft spot for Joshua because of Jenny - and she loved holding him and talking to him. It was wonderful to stand in her living room and see pictures of Jenny (45 yr old pictures) ... she was a beautiful little girl. It's wonderful to see that 45 years down the track Helen and Ben still love their little girl so much, and she's forever one of their six children... certainly not forgotten. It's a good thing to see. Now I don't ever have to feel that I have to forget Joshua or feel less upset or feel less empty... he's my baby, he'll always be my baby ....

I saw a boy with his mom in a store today. He was probably 13 or 14, and was (some sort of) mentally disabled. And all I could do was smile... because I knew his momma loved him SOOO much! I could see it by the way she was letting him help her carry something, and she was smiling. It made me really happy to be out and about with Joshua.

But in that same store (not 5 minutes later) I saw a teenage girl look at me funny. I chalked it up to Joshua being in his sling (his head looks strange in the sling) and ignored it. Just a few minutes later I saw her walk up to her mother and whisper and point. Then they stood there and stared at us. And my mind ran a hundred miles an hour.
*Is she confused about why there's a lump behind his head (you couldn't see it when he was in the sling, just that there's a lump)?
*Is she confused about how small his head is and how it slopes back differently?
*Does she think I hurt him?

I go stuck on "Does she think I hurt him." And I got scared. What if people thought I did something to him? What if people don't get it and assume that? But at the same time I didn't want anyone to come talk to me about it.

I was walking around aimlessly - totally absorbed by these thoughts - when another young girl (sales rep from the store) looked up at me. I thought she MUST be thinking the same stuff, and got more depressed. A few steps later I heard, "Excuse me, ma'am?"
And she asked me, "Where do you get those sling things?" Haha. Here I am totally FLIPPING OUT and this girl's impressed by my handmade peanut pouch. I'm so panicky. I should laugh at myself. I explained that I made it and then walked away ........ smiling.

Joshua's been making noise today - sort of "talking". It's not quite gurgles and cooing, but it's as close as we've been. He's such a good sport - he was in and out of his carseat all day.

He goes for another weigh in on Monday. (That'll be Sunday evening EST)


  1. Welcome back. When you and Tarah are both not blogging, I'm lost. Good luck on finding a house. Just remember, God has the perfect one already picked out for you. We've been in that same place many times and He has never failed us with the perfect home. Even when I've thought otherwise. Seems He's working out the behind scenes stuff.

    If you could see Seth,Tarah and even all of our families homes, you would see that we've not forgotten nor stop showing off Gideon. Those little guys have a way of being in your hearts forever and you are always so proud of them.

    It seems you've hit upon something with your "sling thing". Maybe you should sell them on the web or even upscale children's stores. Just a thought.

    Praying for you.

  2. Hey Susie! Glad you're getting out and about more! I was wondering about when you go back to work.....will you be able to take Joshua and Oceana with you?


  3. LOL - I was worried! I clicked on your blog 3 times in as many minutes last night just to make sure my computer was working properly. Glad to hear everyone is okay!

  4. YAY the Sams are back and doing well!!!!!!!!!!!!!

    Sorry to hear about the renting thing and the apps.

    I'm glad the Lord redirected your thoughts and calmed your fears with the sales lady.

  5. I love the sling story! You seem to have such courage and grace. Reading your words puts some of my attitudes to shame.

  6. Beautiful post. Still reading your blog and keeping you in my thoughts in Virginia.

  7. Oh Susie, don't worry about what other people think. I know we are all guilty of it from time to time but I would like to believe people are more excepting then we think. If I saw Joshua and I didn't know what was wrong with him, I would probably stare a little longer then I should. It's not because I am disrespectful but I would be wondering if the little baby in the sling was going to be ok. Then I would say a prayer for him. I pray for random people all day long :)

  8. Hi!
    I understand your thoughts about what people think. When my son Evan was born, he had a large "vascular anomaly" on his head (a big purple puffy rare kind of birthmark-noncancerous-vascular tumor). It had a big scab from being ulcerated and was right above his eye and on his eyelid. People pointed, stared and asked questions about whether or not "he fell" (at 2 weeks old? Don't you mean, did I drop him?). It can really hurt when you want everyone to see your baby as beautiful, like you do - and see past the differences. God really showed me through that how important what other people thought about me really was to me (ouch) and how He had all the grace in the world for me to be able to have grace with them, explain things with kindness and ignore stares and points (and children asking their parents what was wrong with the baby - and parents trying to ignore them, like they didn't notice).
    I know what you are going through is harder than what I went through (Evan has since had surgery and has only a fraction of the mark left - and a large scar that automatically draws other sorts of questions - "Wow, he's a bruiser huh?"), but I wanted you to know that I'm praying GRACE for you.

  9. I have a nephew who is 11 and is disabled due to seizures. He is in a wheelchair and does not communicate. Every now and then his seizures will cause him to flail his arms wildly (he is VERY lanky) and make lots of noise which causes a lot of stares. Unfortunately, unless one has been around someone with special needs, most people are ignorant and kind of lose their social graces. We have family members that really don't know how to react to someone who is "different" I ended up writing a little book for my nephew and printed it using one of those online memory book creators. I did that so when children come over, the parents can read to their children and realize that different is not really different, just special. God doesn't see the things we can and cannot do. Having my nephew in our family has been wonderful in the fact that my children have been able to see that God can accomplish his plan in someone that the world doesn't deem as perfect. I know it must be difficult for you sharing your son with the world, as people just don't understand, but don't punish yourself when people stare. No matter what people think, he is your baby and a blessing to those who know him. I see God in him, he is beautiful and loved. I wish that there was more we could do to educate people (children) about special needs children and families. I truly believe the reactions are due to lack of knowledge. Anyway, off my soap box! Good luck in house hunting!

  10. It's so great that you have connected with those wonderful people Ben and Helen. Matt told me about their book and dad bought it for me on halfbay...couldn't find it at the library. Can't wait to read their story. I'm glad you had a good time being out and about and am praying for that house.

  11. You know that you read someones blog too much when they start appearing in your dreams!!!! hehe. I had a dream last night that I was babysitting Joshua! He was just hanging out in my lap making the cutest baby noises ever!!

    I'm glad that everyone is doing well! Best of luck finding a house!!


  12. I just stumbled upon your blog and wanted to tell you that you and your family will be in my prayers. I found out when I was 11 weeks pregnant that one of my twins had an encephalocele as well as holoprosencephaly and would die shortly after birth. Unfortunately, the doctors were right as she only lived for 1 hour and 37 minutes. But she knew only love her entire life and I know your son only knows love as well. I wish you all the best.

  13. Oh Susie how funny! As I was reading and you were describing people looking and pointing at you while Joshua rode in the sling, my first thought was "I bet they were pointing and whispering about the sling." LOL! Anytime I wear my baby I get funny looks and sometimes questions.

    Joshua's a beautiful boy inside and out (and so is his Mommy)!